Just waiting for the NHS NW Graduate Training Scheme event to start, and wondering what to talk to the group about….late planning I know, it’s a theme that after 42 years I’m not going to shake.

A lot of the time I end up talking about all-things-Isaac to clinicians or student clinicians, rather than NHS Graduates. These are the people that probably won’t ever change a tracheostomy, or PEG feed in their professional jobs, people who maybe won’t be making decisions about whether Isaac needs a bit of oxygen after an anaesthetic or deciding if he needs a different milk formula.

Therefore, do these folk make a difference?

I wouldn’t be here today if they didn’t. The thing is, Isaac does not care less whether you are a commissioner, a bed manager, a HR person, a finance data analyst or whatever you are in the NHS. He only cares about whether you care about him in the NHS.

If you’re the person in 5 years who makes the breakthrough for coordinating appointments so he doesnt have to be in Alder Hey and Royal Manchester Childrens Hospital at the exact same time for two different consultants (Isaac’s important but he’s not omnipresent), then Isaac will love you just as much as the person who suctions his trachy. You’ve saved me and Lynsey a load of rigmarole of rearranging appointments, and you’ve probably saved Isaac having to miss another afternoon off school – because Clinic appointments are never NOT in school time.

If you’re the person who looks at a commissioning pathway in 10 years and says ‘that bit of the pathway has a huge gap, why don’t we ask a family how to solve it rather than making the same mistake again’ then Isaac and us will love you. You’ll be the one who stops Isaac having gastrostomy surgery and ‘safe swallow’ assessment at Alder Hey but without feeding support being commissioned from them. You’ll be the one stopping Isaac having to wait 4 months for a feeding specialist to be allocated from elsewhere in our county, 4 months of people trying to fix a knackered pathway whilst Isaac built an increasing intolerance of things being put near his mouth….

You never know, someone in the room might be the finance person who thinks ; actually rather than having 2 procurement routes for equipment – one for PEG supplies, one for trachy supplies) which means we field phone calls from Abbott Healthcare asking how many syringes of each size we need and then another supplier asking how many trachy tapes – we’ll design it so that there’s one point of contact. If you are, you’ll have saved me running round the house with the phone in my hand counting effing syringes…my hero.

The NHS is an astounding thing, to which Isaac – and us – owe our lives. Like any big organisation, there’s the capacity for it to ‘grow heads’ and things to spin off on courses never intended by anyone involved. The new graduates have the amazing opportunity to pull some of these tangled strings back into a rational line if they want to. As most things, whether they do it is up to each of them ; like Ray Lewis said ‘how much effort you make is between you, and you’.

It’s hard not to feel useless when we’re trying to secure the services that Isaac needs from the umpteen professionals and agencies involved with him.

I think i’ve sort of worked it out. It’s quite easy to do ‘a job’. The ‘doing a job’ people around Isaac do what their job description sort of lays out. They put in the 30 odd hour week, they tick the boxes, they get paid. They do what the system asks them to do because bucking it is a hassle they don’t like. I’ll give an example – they’ll arrange their diary to see Isaac at school, which may mean taking him out of his favourite activity but at least they’ve ticked the ‘seen at school’ box. They’ll not challenge decisions made by people higher up in their organisations. People higher up who, sometimes have never done the job of the person they manage, and have certainly never worked with an Isaac. But, they ‘do a job’. They get paid every month, they roll on.

In itself, people like that wouldn’t wind me up normally because they exist in every profession and why should it be on me to inject a spark. Thing is, i’ve had 7 years of watching this parade of apathy and frankly it’s shafting Isaac.

Another example ; an application for direct payment support being processed. Someone, somewhere thought it was sensible to get both a Social Worker and a Paediatric Nurse Sister to assess Isaac’s needs and submit the request to a panel of commissioning types. I get it, collaborative assessment, integrated pathways, how sensible. So, both assessed Isaac. Both said there needs to be 8 hours a week from each ‘pot’ of cash ; 8 hours ‘care’ element and 8 hours ‘health’ element. They both sign off assessments to that effect. Off it goes to panel. Panel says ‘no, you can have 5 hours from each’.

My question ; why get two professionals costing in excess of £30,000 per annum each to spend around 4-6 hours doing assessment and paperwork, submitting a professional opinion in order to disregard their assessment at a panel? Are they wrong? Is 8 hours far excessive but 5 hours is perfectly reasonable? Are they incompetent? Is an 8 hour request viewed as us as a family ‘taking the piss’ and asking for an easy life? Which is it? Or, god forbid, are we in a resource led commissioning model that has bog all regard for professional assessment and is default set to dial down any request by a percentage?

You know what, I’d love to know the answer. But I’ll never get it. I’m at the stage where having asked for an explanation of the panel’s workings and reasoning i’ve received an email saying ‘It is a decision that has been made and if you wish to challenge it further then I must advise I will not respond’…REALLY??!

This is about a 7 year old boy with acute disabilities. This is not me, arsey dad taking on some kind of watchdog-esque crusade against a niggling point. I’m tired. I haven’t got the bloody energy to engage a longwinded discourse against a faceless system – i’ve got a full time job, a family and a million other stresses. Whoever is corresponding with me is doing ‘a job’. I’m doing what I can for my son, alongside a job. And I hope to god that I don’t just do ‘a job’ in my job and that I’m actually making differences (us social workers with our ridiculous values eh).

We (royal use of ‘we’, I mean you because i’m already doing my bit) need to make a noise about Wellchild’s Parent led campaign #notanurse_but.

I won’t give a stack of ‘this is why’ reasons. However, I’ll tell you about my families week this week in terms of providing medical care to Isaac. For anyone who hasn’t endured read my blog before, Isaac is my 5 yr old superhero son who has quadriplegic cerebral palsy, a tracheostomy and a gastrostomy.

So far this week since Sunday we (another royal use, but it’s me, Lynsey my wife and his absolutely brill key worker at school) have

Made up 14 neocate elemental feeds. 14 times measuring 350ml of water, putting Neocate powder in, adding fibre powder and shaking. And shaking. And shaking a bit more. Honestly, if Tom Cruise had seen how I can shake a protein shake shaker at 6.15 in the morning he would have played his role in Cocktail totally differently.

Measured 1ml of glycopyrronium bromide into a 1ml syringe 14 times

Measured 2.5ml of gaviscon into a 5ml syringe 5ml syringe 14 times

Measured 6ml of trihexyphenidyl into a 10ml syringe 11 times.

Measured 7.5ml of baclofen into a 10ml syringe 11 times.

Drawn up 60ml of water into a 60ml syringe 30 times

Suctioned Isaac’s trachy in the region of about 30 times

Changed the water in the internal balloon part of Isaac’s Mic-Key button once cos it was leaking (plumbers warranty has expired)

Changed Isaac’s tracheostomy tube once.

Changed Isaac about 25 times

Ordered more baclofen from GP.

Submitted an order for syringes, bottle stoppers and syringe caps to community medical equipment coordinator.

Taken Isaac to Alder Hey for a sleep deprived EEG (he had to lose 8 hours sleep over previous 2 days poor little fella)

Taken Isaac to Chorley Hospital for Ophthalmology appointment.

Taken Isaac to school 4 times (courtesy of ‘gran taxi’, from my fab mother in law who has to get to our house for 7.30 mon-fri as both Lynsey and I have to be out for work).

Also we’ve got Isaac’s twin brother and his ten yr old big brother. Their feeding regime is far less complicated and usually just involves negotiating that chocolate is not an alternative to protein and then just putting something in the oven that they may eat / may spend an hour staring at / may smother in tomato ketchup so it only tastes of ketchup / may try and hide so they can convince us it’s time for dessert.

So, as i’ve said previously, having 3 boys under 11 was always going to make our home something like a mixture of a David Attenborough documentary about marmoset monkeys and the scenes of devastation seen in War of the Worlds (I don’t have a Tom Cruise fixation by the way its just the first film that came to mind, Mr Freud). As parents, we never expected an easy gig. For Isaac’s twin bro and big bro, they were born into this chaos and have had to learn to swim in it, which they do brilliantly. They also know what every syringe size looks like so they can get them for us (just prepping them for summer jobs at Argos as they get older) and big bro can do enteral feeds – he requested to learn.

Why tell you all this, well because #notanurse_but is why. The campaign is about opening the closed doors to the outside world to show what medical care etc families are providing ‘in house’ that they get little support with. There’s thousands of families doing pretty much what we do with their own ‘Isaac’s’ and more. We do it for love (crickey that sounds contrived)….well we do it because we can’t not do it. In the same way when your child toddles through to your bedroom at 3am and says that they’re having a bad dream you maybe don’t put them back in bed and settle them thinking ‘I’m doing this for love’. You maybe think ‘if I do this they’ll shut up and I can go back to bed’. You maybe think ‘well i’m responsible, it’s my role’ or more likely you don’t even think ANYTHING at all, you just do it. You love them, you do what comes with it. It’s just the same with Isaac.

When Isaac was 8 weeks old he had an emergency tracheostomy. The nurses said ‘you’ll need trachy training’ like it was harder than Quantum Mechanics and produced a portfolio for each of us that we had to work through. That was our welcome to the world of being the nurse. I’m not complaining, we just did it. Did it, realised it’s a lot more simple than Quantum Mechanics and carried on doing it. Day in, day out, year in, year out. Just a ‘something that we do’. Similarly, 5 months on from that and it was Mic-Key button training.

What I want for my family is not sympathy. A useless emotion that won’t make an ounce of difference. What we want is empathy ; just an understanding of what goes on. Once there’s that empathy then when I say to a friend ‘i’ve had a terrible morning’ before work then they know what sort of things that may entail for me and my family. In the same way that if they say they’ve had a terrible morning I’ve some understanding of what that may be for them. From that understanding I can try and help, and vice versa.

Isaac is at the middle of a right old tangle of professionals, and I reckon if I did a straw poll then not many would be able to score more than 5 out of 15 on the list I put at the start of this blog as to what we have done this week. That’s why #notanurse_but is needed too – to highlight to the people that SHOULD know that they don’t really know. Not that they don’t care, they just work with resilient families who don’t open the curtains to the amount of things they’re doing. So through the campaign, we may be able to increase that awareness, increase the empathy and insight that professionals have.

I’ve said before in these blogs that campaigns come and go ; some get easily forgotten or just ask for money, or time. #notanurse_but is none of those campaigns. We’re asking parents like me to think about their situation, their needs and what support would help – and to go on the #notanurse_but webpage to perhaps share their story. Everyone else who isn’t in that position, all we’re asking for is a bit of head space…just think about people you know in our position. You don’t need to show up with cakes (well, go on then…), you just need to think about it next time you’re meeting a family like mine so you have some understanding of the ‘behind closed doors’ life of that family and what it means to them, and perhaps how you can ease that pressure through talking about it.#n

Isaac has gone through a lot, all of it with the consent and agreement by us as parents.

If memory serves me right, the first ‘consent form’ we signed was when his ENT surgeon came out of theatre and asked if we would consent to him undertaking a tracheostomy when he was 8 weeks old. Isaac had needed emergency resuscitation 3 times before this, including about an hour prior to this. Of course we consented, it was consent to safeguard his life.

Moving from then there’s been a flurry of consent forms for surgery (around 15 at least) including ones that have consented to him having all his food through a PEG feed for the last 5 years, consenting to him having botox injected in just about every painful place you could put botox, and consent to him having his saliva glands clipped (the thought of which makes me wince, let alone how it must be for him). We’ve consented to an infinitesimal number of medication changes – some of which have brought horrible side effects -, to dye being injected into him for brain scans, to him having to have a ph monitor placed into his oesophagus for a 24 hour period, to him having an elemental diet which in effect means that food has no meaning to him.

We’ve consented to an endless train of devices and equipment, standing frames, head rests, arm rests, foot plates, head ‘pods’, neck braces, AFO’s for his feet, splints for his arms, thumb braces and a ‘sleep system’ which holds his posture with his legs apart as he sleeps.

All we can do IS consent. In doing so we hope that the people asking for that consent know more than we do, and knowing that despite the discomfort and pain it may cause Isaac in the short term it will give positive outcomes medium term.

It is fine to be a mum or dad and do your parental duty to do things that are ‘for their own good’ for your kids we all expect that as parents. We expect there to be occasions , even with a child who has not got any disability, occasions where they have to go through some discomfort and pain – vaccinations, dental procedures etc – and that whilst it’s bloody horrible to be the parent trying to comfort the recently vaccinated 1 yr old it’s par for the course. It will always sit there in your mind as a ‘not particularly happy’ memory of when you knowingly did something ‘for their own good’ that they really didn’t want to happen.

With Isaac we have done this DOZENS of times. Consent, agree, bow down to ‘better informed’ people.

On the dozens of occasions where we have had to do something ‘to’ Isaac, or allow someone else to do something to him, we have always had to think in the bigger picture terms. We carry a lot of responsibility – a of a lot of either convincing of ourselves that ‘long term he wont mind’ or a hell of a lot of ‘we’ll put aside the fact he’s going to be unhappy, for long term positives’. The guilt that creates, over years, on me is weighty.

When he was little, a lot of the procedures, surgeries were life saving or life extending. They were not so much us having to make assessments of whether it would provide a ‘better quality of life’ for him. I am no more qualified to assert what Isaac’s quality of life now, or in the future, is or may be than anyone reading this is so I struggle with the concept. Isaac knows his quality of life, but as he’s been silent since birth and is only now just starting to unlock the padlocks on his communication that cerebral palsy has placed upon him, it’s only over the coming years that we’ll know what the little voice inside is saying.

So, yesterday Isaac went for his latest wrist splints. The process around them being molded, fitted etc has taken a long time but that’s another tale. Anyhow, he’s got these splints. They’re huge.

They’re cumbersome and for a little boy whose arm movement is already very impaired, they must feel like blocks of concrete. ‘He should wear them 8 hours out of every 24 hrs to prevent (further) contractures of his wrists and hands’ we’re told. So that would be overnight then, as he won’t be able to wear them at school as it will massively impact on how he can play or interact with his Big Mack switch. Wearing them overnight will be uncomfortable – imagine it yourself- and, in effect because he’s in a narrow cot bed will prevent him moving his arms.

So, I think what i’m coming to is the point where you start to think “is it worth it?”. Is the medium / long term benefit worth the obvious discomfort and annoyance that these wrist splints will possibly bring. And I use the word possibly with purpose. Because much as there is a medical model and rationale for having them ; i.e. it will stop contractures, the end point for Isaac HAS to be that he can then use his wrists and arms purposefully, or at least more purposefully than he would if he’d never worn the splints. Can that be guaranteed, when the reason Isaac has the development of contractures is his neuromuscular disability – no. Can we sit here in 5 years time and say ‘oh well he’s worn the splints 8 hours per day for 5 years and he’s in a better position now than it he hadn’t worn them’ – no doubt we will and his OT and physio will because THATS WHAT WE ALL WANT TO THINK. What does Isaac want and think? Nobody knows.

I’m sorry because I think this blog is a borne of frustration to a point and you might think i’m ranting a bit, but where it’s coming from within me is that I need to be at peace with why we put Isaac through things. The older he gets, the more the list of ‘things’ grows. Splints, mouldings, standing frames, injections.

The ‘be a good parent’ shaming if you kick back and say no to professionals is the result of them feeling that you’re challenging them by saying no. For 4 years we’ve been being asked by one of Isaac’s team of professionals to have a manual handling assessment for when we lift and carry Isaac. I’ve tried saying ‘no point, there’s nothing we can do except lift and handle Isaac as we currently do’ or ‘you know what, no thanks, we’re good as we are’ but no, there is a checklist somewhere with ‘do a moving and handling assessment’ on it and woe betide the professional that doesn’t get it done when it comes to audit time. It perhaps says something like the family ‘won’t engage’ with assessment in their case notes, or if it gives a full explanation (i.e. print off this blog!) then i’d be amazed. Not engaging with an offer of support…….why would any sane person do such a thing……?

Its not that we don’t want support, we just want that little modicum of control of when we get it and to get asked if it’s right for us, for Isaac. If we as parents struggle to get our consent recorded without it being a ‘non-engagement with services’ then how can a silent little boy, vulnerable to everyone, be expected to. Consent, I thought I knew what it meant, but now the more I think about it the muddier the water is, especially when i’m giving it for someone else.

‘There’s always someone worse off’, yes there is. ‘Give yourself a kick up the arse’, yes done that. ‘You’ve nothing to be depressed about’ – if only it worked like that.

What i’ve found is that depression is an illness that doesn’t pick its times of effect by following a well considered thought process. If it did, then it wouldn’t exist. What it does do is land as an empty, hollow, worthless feeling sitting in your heart and mind when you least want it. Like you’d ever want it…but you know what I mean.

I’ve spent 3 years always trying to keep my bum out of the jaws of the black dog of depression as it chases after me. When it bites it spreads a cloud of desperation. Utter loss of self worth and desperate feelings that, some mornings, you wake with a dread of facing another day.

Depression scares me. I’m more scared of depression than I am of spiders, and that’s going some. At times over the last couple of weeks i’ve felt, for no reason I can exactly pin down (i.e. there’s no one single cause) that I am worthless to the extent that the world would be better without me. That’s when the dog bites. The running away from it is tiring, a constant effort and motivated as much by fear as it is by a love of my family, kids, job and the times when i’m not being bitten.

I wish it was as simple as ‘i’m depressed, and here’s the reason’. If it was then, well, all that well meaning CBT bollocks I know so well would equip me to replace the automatic thought with a controlled one and, abracadabra there’d be no empty, horrible feeling. I do know it’s a combination of things that weigh me down, slowing my escape from the black dog. Carrying bags and bags and bags – a bag called Isaac’s house adaptations, a bag called Isaac’s – at times bobbins – SEND system support, a bag called work, it goes on. I’m not egotistical enough to think that we don’t ALL carry loads of bags. But I suppose the fact that the black dog of depression has bitten me hard before makes me push and push and push and not admit when it’s all getting too much.

There’s nothing good about depression. It’s beyond crap and life affecting. I’m lucky that the last couple of weeks a couple of friends have reached out and allowed me to unload some of the crap from the bags – even if it just meant unloading it and then picking it up again, the relief from the temporary change of putting it aside was massive.

Weirdly, having been fed resilience theory (and facilitating training it!), I know what emotional intelligence and self talk are. Can I apply them to myself? If I could then I wouldn’t have spent time feeling utterly empty over the last fortnight.

One thing that I do understand about depression is that if you’ve never experienced it’s brilliant sense of timing and crushing debilitation then you’ll believe the media. ‘Blue Monday’ was last Monday ; the day when the whole country was apparently at most risk of feeling blue….does the media say ‘it’s blue Monday and here’s a few things you can do to help other people who may be feeling horrible today if you’re feeling ok’? No, it’s almost a ‘if they’re feeling down today then it’s only because it’s after Christmas and January’. Unhelpful to the extent of making people who feel terrible with depression shut down further.

Anyhow, my bum is back out of the black dog’s jaws at the moment, and i’m running (well, as best I can with a torn knee cartilage which will at least grant me an hours sleep under general anaesthetic in the next month or so). I’m terrified of it biting, but hopefully I can build enough distance between me and the jaws I’ll ride the setbacks easier.

How ok is it to moan? I was told last week that I’m ‘so positive despite everything’. Great, I hope that’s how it appears, because for 5 years I’ve been trying hard to not look like I’m beaten down. I laugh, joke, keep busy and keep going.

The point is, positivity is not a given. If anything, positivity is bloody hard work faced with the day in, day out crap that goes with being unable to solve the problems that Isaac faces.

Sometimes, like today, it feels bleak. To be told last Friday by his GP that one of his drugs (trihexyphenadyl in solution) is no longer commercially available, when he has about 4 days supply left causes me and Lynsey’s hearts to sink. Why? Because it’ll be up to us to start making calls to outreach nurses, paeds, neurology (so far) to try and get an answer to ‘so what next’? The GP says they can only get it special order ie made up to order rather than in a pre produced commercial format and they’re clearly reluctant to do that. Why? I couldn’t possibly say.

So, Lynsey has spent today chasing ANYONE for an answer. All the time the clock is ticking. If it’s a special order item it will take 24 hours to order in, at least. But there’s no connection between GP giving a ‘no can do’ and the neurologist who originally prescribed it. It’s left to us to solve. For Isaac.

Ok there’s a lot of stuff I think fall into our ‘mum and dad’ jobs us immersing ourselves into medicines planning between acute trust, GP and CCG and expenditure on special order items is’nt really in our skill sets. Let me stick to making paper aeroplanes and Lynsey to decorating the xmas tree with the help of a rather over excited 5 yr old and 10 yr old.

So, it’s that old communication chestnut again at play. I don’t mind that it’s not flawless – I’ve spent 3 years talking to lots of people who have had to sit and listen to me rabbit on about how to get it better in a 6Cs’y way and how, when communication goes well, it’s produced some outstanding results for Isaac. I know it’ll never be perfect when there’s so many people involved in the network around Isaac. But, without using expletives it’s difficult to convey how annoying it is when it totally falls over like it has on this one little medicine issue and we, as mum and dad, are left to sort it out. It shouldn’t happen, surely?

You might think ‘come on Rick, it’s only a prescription’ but it’s a bit like when Michael Douglas gets told he’s missed the breakfast menu by three minutes in Falling Down ; it’s another little straw breaking and you never know which one will cause you to spiral. I mean spiral as in thinking ‘what is the point of trying’. It’s a grind. We’ve had dozens of these types of things, from having to argue to get a sun canopy / rain cover for Isaacs specialist buggy, to arguing for him to get an SLT feeding provision when he had his PEG fitted and there was no follow up service commissioned, to having to argue about Isaac’s EHCP provision. Everything is an argument.

Proving that Isaac needs things, in a way that makes you feel like you’re audacious to ask. Giving Isaac a voice in decisions where people are happy to do ‘to’ and not ‘with’. Never a month goes by without something. 18 months up to this point to get house adaptations underway so Isaac can have a bedroom and move out of our bedroom for the first time in 5 years. Honestly, I could write a book of the problems, challenges and arguments but you’d be bored and I’d just be banging my head on the table.

So…positivity, yeah, I try. To be negative all the time would feed the black dog of depression that lies within me, and that I’m terrified of coming out. I need to keep my chin(s) up. But please, please don’t think I’m some kind of weird anomaly – there’s hundreds, thousands of parents of children with complex needs who are having to do this day in day out just to function. It’s not so much choice, as necessity.

Sometimes I sit here and think ‘b*llocks to it’ but then, well, tomorrow’s another day. It’ll bring with it a load more crap but nothing compared to what we, collectively as a family (and I mean that, me, lynsey and all three boys) have not already conquered previously.

Carers – we can be like ninja’s ; ruthlessly efficient where it comes to tasks relating to our cared for, committed despite enduring testing and difficult circumstances and pretty much undetectable. There, the similarity between me and a ninja ends – if you’ve met me you’ll know I can’t do anything undetected, bit too big.

But what I’m getting at is that we don’t have a jester suit saying ‘carer’, we don’t have a t-shirt even, not even a hanky with it on, nothing. Even if someone handed me a t-shirt with ‘carer’ on the front would I wear it? Probably not, I can’t wear that for the day job so it’s no use to me, it’d show ‘i’m vulnerable’. Good luck spotting me then.

Do I need to be spotted as being a carer? If you ask me, I’d probably have said not around 5 years ago. I would’ve said no thanks, I can handle it all myself thanks.

5 years ago tonight I would have been bedside at Royal Preston Hospital, as we had been for over 90 nights by that stage at Royal Manchester Children’s Hospital and Preston with a very poorly newborn Isaac. He was about 4 weeks post tracheostomy at that stage. I’d have had no idea what the following years held. So I would have been a carer in the making, a future carer hiding in plain view, but not even thinking about me (or us, as in me and my wife) as it was, rightly, all about Isaac. I would have told anyone who may have suggested we need support to get lost. Which, even if they had opened that conversation once, would have counted as a ‘would not engage’ in someones records.

Time went on, and as I’ve written on here before, I went under. I was still hiding but by this stage I was hiding under a pile of caring. I came into contact with my GP several times, but the connection between caring responsibilities and being depression was never something that the GP connected. Did I need to be spotted? Yes, at that stage I did. Had someone said ‘you really need to realise that being in your position is bound to string you out’ I would have probably agreed. I remained hidden.

So, where do services expect to find these elusive carers? There’s a lot of talk about early identification and prevention, I totally agree but in order to identify a carer you need the awareness to underpin the sharpness of your vision. It’s the ‘you don’t know what you don’t know’ situation. A hundred carers could be missed by just one pair of eyes in a key professional who knows that there ‘a strategy on carer identification’ but doesn’t know how to spot the glimpses of ‘carer’ coming through the camouflage of someone who has other presenting problems.

Ok you can build assessment tools to raise that acuity but i’ve yet to find, or use, a checklist that can replace some well grounded understanding and professional empathy around an issue. So let’s not over simplify the issue by saying it’s possible to systemically solve – you may garner minds but you’ll not engage hearts or fire a passion to make things better, to spot the little things that will lead to engagement, to draw out the hidden ninja carers.

The #imnotanurse_but hashtag today caught my attention, brilliant work by WellChild to launch a campaign highlighting the medical care delivered by parents, siblings and families at home.

Now, confession time. I’m not a nurse. But, my god can I fake it. For 5 years my family has all been nurses for Isaac.

If I sit back and reflect on quite how much pharmaceutical knowledge i’ve developed over the years of us having Isaac I could possibly just decide to break bad and become Bryan Cranston. In terms of medical knowledge I reckon I could blag more than most of the actors on Casualty. How have I learnt it….

Well, when Isaac spent the first three months of his life in NICU we were immediately introduced to the world of medical devices. The little guy spent all his time looking like a badly organised shelf in Maplin, such was the array of electrical cabling he was linked to :

It was a sudden immersion for us ; SATs monitors, NG feeds, doing ‘cares’, learning to pronounce ranitidine and domperidone, learning about CPAP, BIPAP, and more. Much more.

Then, at 9 weeks old Isaac had a tracheostomy as an emergency procedure due to having vocal cord palsy (a symptom of what we now know of him having quadriplegic CP). A trachy. A tube. A ‘how-the-f-do-we-look-after-one-of-those’ trachy. A ‘get-ready-for-the-world-of-suction-catheters’ trachy.

As i’ve said elsewhere on here, I remember a nurse telling us that we had to ‘do trachy’ training. Like trachy training was going to be like this :

Thankfully, it wasn’t. Because even though we’re not nurses, we learned it quick because our little guy couldn’t come home until we did.

Picture this. It was about the 20th December 2010. It was snowy. We lived at the bottom of a steep hill. We were housebound. As Arcade Fire sang, it was a case of ‘No Cars Go’. Isaac, along with his twinny Ethan were laying side by side on a floor mat. Isaac, still NG fed, had his tube taped across his cheek.

Ethan flapped his arms about, as is a 3 month old’s want and with ninja precision managed to get his finger behind Isaac’s NG tube and before we could leap into action it was out, on the mat at the side of them.

Time stood still. The outreach nurse was coming next week to teach us about NG tubes, how to use the litmus strips, how to reinsert a tube. It was feed time too.

The ‘just come back to Preston if you need us at all’ from the nurses as we took Isaac home a week earlier was now not just a memory but an impossibility.

So, google made me a nurse. I googled ‘how to put an NG tube in’ and followed the instructions. I’d not got rubber gloves, but I had litmus strips. It was like something off Macgyver

And, I did it. Not that i’m a hero. I’m not a nurse but. I’m a dad. It needed doing. I didn’t follow NICE guidelines but what I realised, even at that 1 week home stage is that a lot of the ‘nurse stuff’ that Lynsey and I have to do isn’t as per guidelines. We do our best.

Suctioning? Yeah, trained with ‘put your gloves on’ put the catheter down once, back up then replace it with another catheter’. Course we do. At 3am on the n’th time that night we grab our gloves, we go through 3 catheters to suction one bit of spluttery saliva and we then wash our hands before going back to bed. Course we do. I’m not a nurse.

We measure out glycopyrronium, trihexaphenadyl, baclofen, gaviscon and omeprazole 4 times a day into enteral syringes. My 10 yr old and Isaac’s twin aren’t nurses but they can grab ‘two sixties, two tens, a five and a one’ (syringes) from a drawer in 10 seconds. They know where ‘noses’ are kept, and can identify from how Isaac’s trachy sounds when he needs suction. We put hyoscine patches on, change Mic_key buttons, put AFO’s on, change trachys and do the plumbing of the syringe line like engineering experts. But we’re not, we’re a family, we’re not nurses.

The thing is, the #imnotanurse_but campaign is brilliant at capturing the ‘you just get on with it’ bit of being a parent of a child with complex needs. It’s not called #imnotanursesoIgiveup. Because you don’t. Not because you can’t (a common misconception that parents like us see an ‘Isaac’ as a burden), but because you don’t want to give up. You learn because the things you’re doing are often the things that bind the little amount of time you may have one on one with your child.

Life goes on. We both have to work full time. Isaac’s brothers have to go to school. Not being a nurse is a brilliant way of filling the in-between times, it would be great if just occasionally people got an insight and i’m glad there’s a campaign to highlight it. Not for sympathy, but a bit of empathy, sometimes.

Multi agency synchronisation. Partnership working. Working together. Just three phrases that sit as the foundations for just about every aspirational policy position, project and service design throughout my career in the public sector. Now we’re talking about integrated services. Riffs on a theme – that theme being ‘everybody row in the same direction’. That’s row as in boats, not row as in what we do when we’re not rowing in the same direction.

I’m a long time into working in the health and social care field, and the fact that the ‘working together’ agenda keeps being altered and tweaked can make it feel like collectively we are playing the role of Sisyphus, but that instead of a boulder we’re pushing blancmange. Every time we make progress the problem of communication systems between agencies, the problem morphs into a different shape. Sort out the I.T systems, it’ll then be information sharing problems. Sort out the info sharing problems and it’ll be thresholds for services being different, and so on. But, and it’s a big but, should we get jaded? Partnership working should be seen as a constantly evolving, iterative learning experience where there aren’t ‘failures’ but genuine opportunities to improve. Or as a learning blancmange…or something.

Isaac’s healthcare transcends 5 trusts, a CCG and around 14 professionals, minimum. Each of these 5 trusts will have a nuanced idea of what ‘perfect communication’ looks like within it’s trust. Ideally the directorates, teams, and services in each trust are like a well oiled machine ; clinical and non-clinical services chugging along in perfect synchronicity. Ideally. And I’m sure it happens like that….how could it not…?!

Right, so 5 trusts with perfect internal comms that means, for example, that when Isaac goes to the acute trust (trust 1) outpatients department for orthopaedics review on his hips then the Ortho knows exactly what his blood results were from when he was in A+E the week before. That’s if there’s good comms in one of the 5. Achievable? Occasionally in our experience.

Lets go from one to two trusts…or a trust and the GP…then when Isaac attends Ortho outpatients at the acute trust they’ll know not just the blood results but also what antibiotics the GP has given him for the chest infection that is affecting him to the extent he’s breathless and giving you dirty looks when you’re examining him. Achievable? Seems to depend on timescales but not something out of the realm of possibilities.

Once we get to three trusts and beyond we’re approaching a level of integration and comms that is beyond imagination. For Isaac to go to the acute trust for his orthopaedic outpatient appointment, them know about his chest infection, know about his antibiotics, know about the orthotic splints that he wears several hours a day but we’ve taken off him for the ortho appointment (orthotics trust number 2), know about the problems with balancing the dosages of trihexaphenadyl and baclofen that affect his muscle tone (neurology, trust number 3) , know about the positional problems that OT, Physio and wheelchair services are helping with (trusts 2 and 4) and know how his positioning affects his breathing (ENT, trust 5) is just ridiculously ambitious. So that’s what Isaac is up against. Five trusts, each knowing 20% of his healthcare needs, maybe 30% if we as parents fill gaps in info during consultations and pass on what’s happened elsewhere.

So for Isaac full service integration and partnership sounds really grand but lets just sort the small stuff first. Hopefully the Vanguard sites will highlight this sort of problem and create clearer communication systems, but first, I hope they get an understanding of what it is really like for Isaac. Some empathy about the unnecessary appointment clashes because of lack of alignment of appointment bookings, hours spent in a car seat going to visit different clinics all across the North West, weeks of delays when trust 1,2,3, 4 or 5 need to refer something to each other and then agree who is doing what. It’s a mess. Why get the empathy in place first? Because when designing systems it would help to see it through the person’s eyes who you’re doing it for (NB not doing it ‘to’).

That all said, there are several professionals involved in Isaac’s care who know, realise and empathise with the mess it can be in and they act as the gel and glue between the disjointed pieces. Phone calls, emails, exchanges of info all done by people who know what they can improve for Isaac rather than systemic responses. Isaac’s physio at trust 2 who contacts trust 3 and speaks with the physio at trust 3 about Isaac’s muscle tone and relays info before we take him for clinic appointment – because if all you examined was Isaac’s muscle tone after sitting in a car for an hour you’d be totally misled, and so on. The outreach nurses at trust 4 who have spoken to trust 3 neuro nurses and contact Isaac’s GP by phone to explain medication regime changes rather than waiting for the letter to go from trust 3 to GP. I know it won’t come as news to anyone that people make communication systems, systems don’t make people communicate.

So, in the end, working together for Isaac takes an individual AND collective commitment. Let’s continue to strive for systems that make people communicate – it’s the long fight, but in the interim lets make it people led, at every level.

The thing is, there is an difference to me between caring and Caring. And it’s not just hitting the shift key before ‘c’. Its about the whole label of being a carer, or Carer.

You see, to my three boys they reckon i’m an idiot just dad. I’m not a carer, or indeed a Carer. I’m just him who makes breakfast, him who takes us to nursery or school, him who intervenes when we’re fighting, him who does the stuff dads do. To my wife, Lynsey i’m no more a carer in her eyes than she is in mine. I’m a dad, a husband. Not even a carer with a little ‘c’.

Then there’s times when I realise i’m actually a carer, little ‘c’.

When my head is like a filing cabinet that has fallen over and i’m balancing organising the whole circus of professionals that surround Isaac, remembering to make his meds up, battling to get the resources that he needs (note ; not the resources he ‘wants’ – this is a crucial thing about us parents with children with disabilities, its about battling for needs not wants), working Mon – Fri on the ‘day job’, getting Jake to rugby and football and so on. There’s the occasional moment where you sit there and think ‘ this isn’t ‘dad-dom’ this is ‘carer-dom’ because without Isaac having disabilities I’d only be carrying about half as much in my head at any given time. Thats me being a carer, small ‘c’.

When my chin goes down and I convince myself that the world is a dark place with threats in every alley and that there’s a fight for every threat real or imagined. That’s not the true me, thats the effect of the depression that the massive overload of everything else has caused me to experience sometimes. How do I know that? Because I never felt that until 5 yrs ago. That’s the effect of caring, small ‘c’.

So caring is basically a synonym for my life, as much as being a dad or husband is. I know no other life – I don’t long for a ‘B.C’ (before caring) life because that would be to in some way wish to paint Isaac out.

With a big ‘C’ Caring is a whole lot different. When people talk about ‘Carers’ it can be almost like if you put a lot of little ‘c’ carers together they become ‘Carers’. We’re a homogenous group when we come together in some people’s eyes. We’re thankfully decades on from people talking about ‘the disabled’ as a group but sometimes when you look at the media there is presentation that ‘Carers’ are this same sort of subgroup.

Without doubt if you put a group of Carer’s together then I’d guess there’s some baseline similarities :

Exhaustion – physical, emotional, mental, whichever. I don’t honestly think that any carer wakes each day 100% refreshed and with every aspect of their resilience recharged ready for another day.

Difficult experiences with agencies involved with the person they care for – I say ‘difficult’ because profanity wouldn’t be diplomatic.

Commitment – you can’t be a half baked carer. You are or you are not. ‘I’m a bit of a carer for my son’ – you’ll never hear that. The carers with a little c are the people who give everything. ‘Effort is between you and you’ as Ray Lewis said and the effort required to give what you need for the person you care for is something nobody else aside from that person will see or care less about.

But that’s just my view. I’ve sat in rooms full of carers at Carers events and aside from those baselines i’ve guessed at there’s not much else defines us.

Parent carers, sibling carers, husbands caring for wives or vice versa, young carers- all those sub group labels contain tens of thousands of stories and real people. Go further and it may be carers dealing with dementia, a relative or partner’s mental health, a child caring for a parent who can’t face the world without a drink. For policy makers and media I understand you need to rationalise the chaos of our carer lives and you want to categorise, file, organise. The one plea I have is realise that when you say Carers you realise that there’s millions of individual stories in there, people who most of the time don’t realise they are even carers with a little ‘c’ because it’s their life. Use grouping carefully and usefully to effect change for carers, as much as for Carers.

Im a carer who’s job made me get over any anxiety of talking in front of groups and with a passion to help other carers (blokes especially) realise that it’s ok to talk about being a carer. I’ve spent a lot of time this last few months being a Carer Champion (or other such titles depending on where i’ve spoken) and it worries me that when I tell my families story that people think I am a Carer not a carer. I talk because I want to cause people to think about other carers. I want male carers to be reassured that the sky doesn’t fall in if you admit you’re struggling and you need help.

This week there’s going to be clips of my dulcet Boltonian accent going out on Radio 2 at different points as part of Carers Week. My main hope is simple ; that one bloke who is a carer (not ‘Male Carers’ – too big a label….) may hear it and get help before he goes under like I did with depression. One person. One little ‘c’ carer. If us Carers can all benefit by proxy then beltin’ as we say up here nr Wigan, but really, one person at a time is fine with me.